MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Wednesday, 30 March 2016

There are so many things on my mind at the moment, from academy schools and benefits to the simple joys of spring. There was a very good programme just over a week ago on the BBC called The Battle for Christianity, presented by Professor James Beckford, who pointed out the frequently proclaimed demise of faith in this country has been greatly exaggerated. A very informative programme.

However, that's not first on my mind. I recently saw a title I liked, "From Conception to Completion", which to my mind means that we should be concerned about life from its beginning to its end. This post is concerned about its beginnings. I wrote to my MP on 18th March:

Dear Ed

Monday is World Down's Syndrome Day, I gather, so I hope you
won't mind my writing to you on a matter of personal interest to me.

My goddaughter's (now in her 40s) older sister was born with
Down's Syndrome and is still living a fulfilled life. Much, I'm sure, is due to the care and hard
work that her parents devoted to her in her early years. In my view and in theirs it would have been
tragic if she had been screened out before birth. Ultimately she has enriched their lives. I think there is a real danger in pursuing
the trend to eliminate prenatally any babies who do not conform to our standard
view of what is "healthy".I
suspect it was this sort of policy that led to the dangerous rise of eugenics
pre-war.

The UK National Screening Committee (UKNSC) has recommended
that a new technique, 'cell free DNA' (cfDNA), is implemented into the
country's Fetal Anomaly Screening Programme (FASP). This is an antenatalprogramme by which pregnant women are given
tests to detect whether their unborn babies are disabled through initial blood
tests, and on the basis of the probability these give, the choice of more
invasive prenatal diagnostic (IPD) tests.

IPDs carry a risk of miscarriage and a small minority of women
do miscarry due to them. The cfDNA technique meanwhile, is a non-invasive
prenatal test (NIPT) that works by genetically analysing fetal cells in the
mother's blood for signs of fetal anomalies. The UKNSC believes that
introducing cfDNA as a secondary test, would reduce the numbers of women that
go onto IPDs, and thereby reduce the miscarriages that are caused by them.

A pilot study that the UKNSC themselves commissioned,
however, concluded that if implemented, cfDNA would lead to 102 more Down's
babies being detected every year.

The latest figures
(http://www.binocar.org/content/annrep2013_FINAL.pdf) tell us that 90% of
babies who are prenatally diagnosed with Down's syndrome are aborted. Much of
this is due to the pressure that parents feel to abort their baby due to some
bias in the system, and the profound lack of information or support offered to
them. If then, as the UKNSC pilot study predicted, 102 more babies with Down's
syndrome would be detected due to cfDNA implementation, 92 of these would be
aborted. Based on the most recent figures for Down syndrome births (2013), this
would mean a decline of 13% reported live births of babies with Down's
syndrome.

This would have a profound long-term effect on the
population of people with Down's syndrome in the community and enable a kind of
informal eugenics in which people with certain kinds of disabilities are
effectively 'screened out' of the UK population before they are even born.
Implementing cfDNA at this stage would effectively mean introducing a worsened
form of informal eugenics into our culture than already exists.

Would you please consider talking to Jeremy Hunt MP, asking
him to halt cfDNA implementation and provide medical reforms that will bring
support to people with Down syndromeand
their families and alleviate the discrimination that they commonly experiences.

confess that the meat of this letter was borrowed from the admirable Don't Screen us out charity, but it is something about which I feel strongly, as I believe many people with disabilities do. They see the tendency by "normal" people and politicians to view their lives as not worth living, and therefore better to eliminate before birth. Whereas I, having lived an active "normal" life before my MND, understand now in a way I hadn't fully seen before that living with disability or "abnormality" is by no means an inferior sort of existence. Indeed only yesterday I received an email from a fellow MND patient who said that she felt she was a "stronger and better person" now. Too easily do those who pass laws for us assume that they know the answer; too often, I fear, they are led by economic convenience rather than by human understanding.

We should not forget that the Nazi pogroms had their roots in apparently benign eugenics.

Anyway I had a reply from Mr Vaizey - which contained, to be honest, pretty much what I had expected, the standard government-speak statement.

Dear Michael,

Thank you for contacting me about non-invasive prenatal testing (NIPT).

I understand your concerns and I recognise that with the correct help and support, most people with Down’s syndrome are able to lead healthy, active and more independent lives.

The NHS Fetal Anomaly Screening Programme (FASP) in England offers women choice in pregnancy. Screening is described as an option, not an inevitable aspect of routine antenatal care. The screening programme is careful to explain that choosing not to have the test is a valid option for a woman. Women are invited to make an informed choice based on their own values and beliefs about whether to participate, and regarding options following receiving their results.

The UK National Screening Committee (UK NSC) advises Ministers and the NHS in all four countries about all aspects of screening policy. In January 2016, the UK NSC announced its recommendation that screening for Down’s syndrome using non-invasive prenatal testing (NIPT) be introduced as an additional test into the FASP, as part of an evaluation. This follows a full review of the published scientific and cost evidence relating to NIPT, following combined testing. A copy of the UK NSC’s review is available at http://legacy.screening.nhs.uk/fetalanomalies

Ministers welcome the UK NSC’s important recommendation on NIPT which has the potential to transform antenatal care. I know that the Government is currently considering whether this could be introduced as part of the NHS FASP.

Thank you again for taking the time to contact me.

Yours sincerely,

To give him his due, as well as being a minister of state, Ed Vaizey is a good constituency MP, and I believe he does give such ethical matters his serious attention.

I just hope that we never reach a brave new world of standard model human beings.